Aiza’s spinal CSF leak was misdiagnosed for five years. Under the guidance of her doctor, she began trying every possible migraine medication, but nothing worked—because Aiza did not have a migraine headache. What she had was spontaneous intracranial hypotension due to a spinal CSF leak.
It wasn’t unusual for Aiza to be climbing up and down ladders, scrabbling through steep creek beds, or hiking through rocky terrain. After all, as an environmental engineer, that was part of her job. What was unusual for her was her racing heart, the galloping, irregular heartbeat that startled her out of nowhere one day. Aiza was an active person, a married mother of two boys, and she wasn’t used to anything slowing her down. But this did. Concerned, she went to her doctor, who prescribed a beta-blocker and advised her to stop drinking caffeine. The medication helped stop her palpitations, but she noticed a strange headache creeping in. Soon she was experiencing daily headaches, along with other neurological symptoms, including dizziness and sensitivity to light and sound. She was evaluated by a neurologist, who reviewed her brain MRI and told her these headaches were likely migraines. Under the guidance of her doctor, she began trying every possible migraine medication—pills, steroids, nerve blocks, IV infusions, everything—but nothing worked.
Nothing worked because what Aiza had was not a migraine headache. What she had was spontaneous intracranial hypotension due to a spinal CSF leak.
Her journey to that diagnosis—and, beyond that, to a cure—was its own rocky terrain. After living with her constant headache and other neurological issues for nearly five years, Aiza became so debilitated that she was unable to get out of bed. She couldn’t stand up without becoming overwhelmed by dizziness to the point of falling down. Finally, she was able to meet with a doctor who had a background in spontaneous intracranial hypotension, and this doctor recommended she get an epidural blood patch right away. Blood patches are often the suggested treatment for patients with intracranial hypotension, and some patients experience relief from their symptoms. For others, the relief is minimal or short-lived. For Aiza, this non-targeted epidural blood patch did not alleviate her symptoms, and so her doctor scheduled her for another test, a CT myelogram. This kind of spinal imaging test is performed by a radiologist, and contrast dye that is injected into the space where cerebrospinal fluid normally resides is able to be visualized through CT scanning. This enables doctors to better assess the location of a suspected CSF leak. Aiza’s CT myelogram wasn’t conclusive, but it revealed some areas of extradural contrast along her spine that her doctor found suspicious. She had another epidural blood patching procedure, this time targeted at the myelogram injection site and the suspicious areas seen on the scan. This time, the patching worked. For the first time in five years, Aiza was headache-free.
Within a few days of patching, Aiza found herself experiencing symptoms of rebound intracranial hypertension, not uncommon to patients after a successful patch. After five years of too little fluid around her brain and spinal cord, Aiza now had too much. But after starting medication to help with that, it was only a matter of weeks before she was able to start walking and being upright again. She eventually began gentle physical therapy, being careful not to stretch or twist or otherwise stress her dura mater, the tough membrane encasing the brain and spinal cord. After a few months, she was able to return to work on a part-time basis.
Today, Aiza is back to doing what she loves full-time, traveling to inspect sites, interacting with clients, parenting and spending time with her family, and exercising. She still grapples with rebound intracranial hypertension, which she manages with medication, and she’s not quite back to her previous levels of activity; but she’s getting there, and learning how to pace herself. The main piece of advice she has for other people experiencing spontaneous intracranial hypotension due to spinal CSF leak is this: Patience, patience, patience. It can take a long time to get a diagnosis; after diagnosis, it can take a long time to get treatment; after treatment, it can take some time to be back to normal. So having patience is key, as is being stubborn, she says—stubborn in a good way. As she put it, “I do things fiercely. And I never give up.”
Our team at Spinal CSF Leak Foundation wishes to extend our appreciation of all those physicians working so hard to help patients, as well as those who assisted with this feature story.